Sunday, September 7, 2014

Part 1: Radiation Simulation

Four weeks after my brain surgery I began the process of
starting radiation therapy.

Seattle Children’s doesn’t have radiation therapy machines,
so I had to go to the University of Washington medical center for
treatment. UW Medicine was such a
contrast from the bright colors and decorations at Children’s. Everything was
white and clinical. It felt like a maze because all the hallways looked the
same. The people were different too; not as warm, welcoming and understanding. I
quickly became very grateful that I was young enough to be treated at
Children’s. I wondered why adult health care didn’t have the same standards of taking care of the person not just the patient as
child-centered health care. What would adult health outcomes be like if regular
hospitals functioned more like children’s hospitals?

I digress. My first step was pre-stage where I had a mask
made that would hold my head still during treatments. I also had a CT that
would help with alignment at the next stage; simulation. The people working
with me were very nice and sensitive to my situation. They were very kind and
made me feel more at ease about the whole process. I can’t remember their
names, but I am very grateful for their kindness.

Unfortunately, I didn’t stay at ease for long. My next
appointment was for my radiation simulation, the process used to define the
radiation treatment field. This is a very important step of the process that
defines the areas that will be exposed to radiation in order to limit exposure
and damage to other tissue and organs. The process is similar to having a CT or
MRI done. The patient has to lie very still on a hard table. I also had my head
attached to the table by the mask made in the previous stage. The process was
supposed to take maybe an hour.

My alignment was unusually challenging and I was on the
table for several hours. Every time the door opened I thought it was over, but instead
a new person would enter and adjust my position, trying to figure out why it
wasn’t working. As each lab-coated person entered I felt more and more like a
science experiment and less like a human being.

I felt vulnerable and nervous and scared. There I was, 15
years old, nearly naked, strapped to a table trying to keep completely still
waiting and hoping that this would all be over soon. (I also really had to
pee.) I was so uncomfortable. The table was so hard; especially for my head
which was still tender around the surgical incision. I was scared because I
didn’t know what was going on and felt very self conscious lying on the table
with all these people peering down at
me. Nobody asked how I was doing they just came in, re-positioned my body as if I
were a puppet and didn’t explain what was going on. I kept thinking to myself
that the next time someone came in I’d ask to go to the bathroom. I felt conflicted.
I wanted to move so badly, but what if I got up and it messed everything up? I
also thought that I should just stick it out so that it would be over.

There are a few moments of sensitivity and compassion that
stand out in this experience. At some point, my technician, Jamie came in on
her own to talk to me about continuing and to give me a short break. I was so
grateful to be able to move and know a little bit more about what was
happening. Throughout my treatment, Jamie was always very kind and thoughtful.
She approached everything in a very sensitive and personal way that helped me
to feel more comfortable with the situation.

After Jamie left, simulation continued. Finally, the nice
man from pre-stage came in to help. He talked to me instead of about me and said
we were going back to the CT room. I asked him if I could go to the bathroom before
returning to simulation. When he said I was done for the day, I was so relieved
I wanted to hug him.

This was the most uncomfortable, dehumanizing, degrading experience
in my life. Thank goodness for the man from pre-stage and Jamie who were
sensitive enough to recognize my discomfort and help me. I think a major problem in our health care
system is that practitioners can get so focused on diagnosing and treating the
patient that they forget about the person behind the symptoms.

In health care and in life compassion goes a long way.
Practicing compassion in every part of our lives allows us to remember that
other people have feeling and fears too. Taking the time to recognize that can
make all the difference in the world to another person.